A place for couples dealing with illness to find resources and advice, hear stories, and discover support. Whether the illness is chronic or acute, the result of disease or accident, couples can learn strategies for coping with the changes illness brings into our relationships and our worlds.
The information provided in this blog is for educational and support purposes only. It should not be used as a substitute for seeking professional care.

Friday, October 31, 2008

Alzheimer's Caregivers: The Hidden Patient

When any chronic illness takes root in a family, everyone gets sick. But the one whose suffering is often equal to the patient's, and is often ignored, is that of the caregiver. Dementia caregivers in particular, often the partner, suffer physical exhaustion, emotional depletion, and chronic depression.

Caregivers -- The Hidden Patients

Approximately 80% of dementia patients are cared for by family members. That's millions of family members who provide care for a parent or relative, many of whom must balance these duties with the demands of their full-time jobs and other family members. If you are caring for a family member or friend with Alzheimer's disease, this Special Report from a recent Johns Hopkins Memory Bulletin offers practical support and advice.

With our population aging and the number of Alzheimer's disease patients in this country predicted to steadily increase over the next two decades from 5.5 million today, the number of caregivers will have to increase as well. If you are not a caregiver already, the chances are high that you will become one at some point.

Studies that measure depression or distress in caregivers report that rates of these symptoms are two to three times higher in dementia caregivers than in the general population. Other studies reveal that social isolation and family disagreements are more prevalent in Alzheimer's caregiver families than in similar families who are not caring for someone with dementia. What kinds of emotional problems do caregivers of Alzheimer's patients have? Many experience a mixture of feelings, including frustration, sadness, anger, irritability, helplessness, guilt, and depression.

Being a caregiver for a family member or friend with Alzheimer's disease can be so stressful that doctors often think of caregivers as "hidden patients." Because caregivers are often faced with overwhelming day-to-day responsibilities, many stop going in for medical checkups, self-medicate their anxieties with alcohol, don't exercise, and eat poorly.

Not surprisingly, Alzheimer's disease caregiver stress takes a heavy toll. Caregiver stress and burnout symptoms are very similar to those of depression. They include:

Denial . . . about Alzheimer's disease and its effect on the person affected. "I know Mom will get better. They must have made a mistake."

Anger . . . at the person with Alzheimer's disease and others. "If he asks me that question once more, I will scream!"

Withdrawing socially . . . you no longer want to stay in touch with friends or participate in activities you once enjoyed. "I don't care about getting together with the neighbors anymore."

Anxiety . . . about facing another day with the Alzheimer's patient and what the future holds. "I'm worried about what will happen when I can no longer provide care."

Exhaustion . . . you barely have the energy to complete your daily tasks. "I don't have the energy to do anything anymore."

Sleeplessness . . . you wake up in the middle of the night or have nightmares and stressful dreams. "I rarely sleep through the night, listening to hear if Dad is out of bed."

Emotional reactions . . . you cry at minor upsets; you are often irritable. "I cried when the grocery store was out of my favorite cereal. Then I yelled at the clerk."

Lack of concentration . . . you have trouble focusing, and you find it difficult to complete complex tasks. "I used to do the daily crossword. Now I am lucky if I can concentrate enough to solve one quarter of it."

Health problems . . . you may lose or gain weight, get sick more often (colds, flu), you may develop chronic health problems (backaches, headaches, high blood pressure). "Since the spring, I have had either a cold or the flu. I just can't seem to shake it."

If you're experiencing any of these symptoms, consider contacting an Alzheimer's disease support group, talking with your religious or spiritual leader, consulting with your primary care physician, or making an appointment with a counselor. Here are some good resources to consider:

The Alzheimer's Association (225 N. Michigan Ave., Fl. 17, Chicago, IL 60601- 7633; (800) 272-3900). This fantastic group has been at the forefront of helping caregivers and supporting research for more than 25 years.

Local medical centers. Some medical centers offer caregiver courses that teach practical techniques for managing the anxiety, agitation, aggression, and other upsetting behaviors that people with Alzheimer's disease may exhibit.

Alzheimer's support groups. Alzheimer's support groups are great sources of helpful information, solace, and compassion. The other people in these groups will understand the complex and sometimes conflicting mix of emotions that Alzheimer's disease caregiving engenders, such as grief, anger, resentment, helplessness, embarrassment, guilt, despair, and even suicidal thoughts.

4 comments:

Anonymous
said...

Hi Barbara, It's nice to read your blog. I write on similar topics and was my mom's daughter first, and caregiver. She had Parkinson's and Alzheimer's, so I know very well what a caregiver struggles with--physically and emotionally.

I'm so glad to see more information on the Web. We need a village of information and support. Each person does their part to lighten the load.

Before becoming increasingly ill, I volunteered at a day program with Alzheimer's patients. I LOVED working with the patients and it gave their care-givers a much needed respite. It was one of those experiences where I can truly say I got more out of it than I gave. It was wonderful to help give something back to the patients, making their lives more social and upbeat. The care-givers were so appreciative, and it was such a good program that it become a model followed all over the country.

I wish I were well enough to do it now. I miss the times I spent there. I am so glad you wrote a post on such an important topic, and one that gets overlooked so often, the care-giver role.

I have been the spousal caregiver to a sudden cardiac death (anoxic TBI) victim for 16 years. Recently completed treatment for head and neck cancer, I find that I am totally at the end of my rope and compassion. No family members are willing to help, and I grow more distant with each new "problem" that comes up. I want to "LIVE" again -- and I feel like the forgotten integral piece of the puzzle. Support groups have been worthless. I cannot abandon him, and I cannot see a future.

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About Me

In November, 1999 I was whacked with a mysterious chronic pain syndrome that took me out of my life. With the help of my husband, my dog, and a combination of western and alternative approaches, I have a new life that includes working, writing, mountain climbing, smiling, and managing pain. I learned a lot along the way, especially about illness and the couple relationship. I'm also a psychotherapist, a business consultant, and have written a book about couples and illness, which was published in March 2013 (Roundtree Press)

“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”Susan Sontag